Hi Liz,

Yes, you posted in the right place! Welcome.

That's a pretty tragic story. I don't know if it helps at all to know this, but many people remain undiagnosed for decades. It does rather sound like you should have been properly investigated before you did though, how infuriating that must be.

I've often been told I have a thick skull, but never by a doctor.... (just kidding, I have no idea about the thickness of my skull).

Yes I do get pain in the back/base of my head, I believe it's a muscle attachment or some such (it's not just joints that are affected/pained by AS).

Your assumption about exercise is exactly right, it should be tailored to match your abilities. In other words, do enough to help loosen up, but not so much that it makes it worse the next day.

You'll find many friendly ears that will listen to you here (let it all out, it all feels a bit better after you do). This is a place where you'll be given advice when you ask for it and sometimes when you don't. Try not to be offended when you get advice you didn't ask for - people are always trying to help. We're all here for mutual support.

Cheers,

    Loz
  • Life isn't always a matter of holding good cards, but sometimes of playing a poor hand well.